This blog explores my professional experiences and personal feelings as I have worked with people who are in the last chapter of their lives. I dedicate this blog to all of these people who have each taught me something new about life and about myself. The stories in this blog, however, are all fictionalized. Any resemblance to real life people and circumstances is purely coincidence.

Saturday, February 26, 2005

Before I go into an explanation about professional boundaries, I want to start a discussion on what they mean. In nursing school, there is a strong emphasis on learning to maintain professional boundaries. Some boundaries are more obvious than others. I would love to hear from you - which of the following actions seems like a breach of professional boundaries (again, some will be more obvious and clear than others; people may disagree about some of these; some of these may be illegal):

1. visiting your "favorite" patient on your day off2. calling a patient in the hospital from home on your day off3. visiting a patient after they've transferred to another floor/facility4. telling a patient that you love them5. pursuing a romantic relationship with a patient6. sitting on the edge of the patient's bed while you talk to them7. giving a patient your home phone number and/or address8. copying down a patient's address to send their family a condolance card after they've died9. copying down a patient's phone number from his/her chart and calling them later to find out how they are doing

Again, tell me which you think clearly is and/or is NOT appropriate professional boundaries. I also welcome hearing other behaviors that may have questionable appropriateness.

Monday, February 21, 2005

Again, I don't think there are wrong answers to these scenarios so long as our intentions are good. And sometimes there is no answer that fits well. This is definitely one scenario that I continue to grapple with (see previous post if you are just now joining us).

I have been involved in numerous types of responses to this scenario. One time, a doctor and the patient alone made all of the decisions, the patient signed the paperwork and immediately fell into a coma. I was then left to deal with the aftermath with the family. Although, yes, it is ultimately the patient's decision, if that decision is made without the family's involvement, that can be very painful for everyone involved - the family, the health care providers and ultimately the patient, as they may sense the intense distress of their family at the end. This was not the most peaceful death from that perspective.

Many people have DPOA's (Durable Power of Attorney). A DPOA is someone who can made medical decisions for you when you are unable to speak for yourself. Although I am generally strongly in favor of DPOA's because they can look after your interests if they know and respect them, there have been cases where the patient decided they were ready to die, but when they slipped into a coma, the DPOA stepped in and refuted that decision.

There are so many ways for this scenario to be played out poorly.

I like JennyNYC's idea of trying to bring hospice up as if it were their idea. If it works, brilliant!

I agree with Jeremy's comment that the family is being selfish by not letting the person who is dying go. But I would also argue that it's selfish for the dying person to make that decision without at least "hearing out" their family. I've seen families split in two over these decisions and afterwards I am left wondering if they ever made ammends. I do not think of those as "good deaths." It's all about relationships and trying to keep open, constructive communication. In life - before dying becomes imminent, we all struggle with these same issues. How do we do what's best for ourselves while still being compassionate to the ones we love? Has anyone not grappled with that dilemma? Has anyone mastered it? If so, let me know! :-)

These scenarios likely arise from a lifetime of discordance in these families. The changes that could truly benefit these families are not lessons that can be easily taught at the bedside when you're in your last days. These are ways of being that need to be practiced throughout a lifetime.

I am not Buddhist. As I've mentioned before, I don't have a religious creed. But I try to find wisdom everywhere - in my patients, in my teachers, in my friends and family and in myself - and in my blog readers! :-) But the main thing I've picked up from Buddhism is to be compassionate. It is a lot harder to have all of this conflict when families are compassionate with one another and with staff and when we are compassionate with the patients and their families - and with other staff (that could be a whole 'nother post there). And although compassion cannot easily be taught overnight, my best response to these situations is to work even harder to practice and demonstrate compassion. I listen to the family express their pain and anger and sorrow and try to sympathize as best as I can. Believing your feelings have been heard goes a long way towards acceptance of even the most undesirable of life's experiences. Most of us bloggers should know that, right? Why else do we write about the bad times?

Friday, February 18, 2005

Back by popular demand – here is a hypothetical situation and I want to hear your opinion on how you might handle it. I’ve had a lot of cases that were along this theme lately. After hearing your thoughts, I will share a little about things I’ve done under these circumstances.

Ms. Ingot is 53-year-old female patient with metastatic breast cancer that has spread to several organs, including the lungs and bones. She has been suffering with severe dyspnea (difficulty breathing) and bone pain along her spine where her metastasize has occurred. Her two adult children (a 31 year old son and 29 year old daughter) and her husband have been very involved in her care.

The medical team has broached the subject of hospice. Ms. Ingot responds with insightful, intelligent questions and seems to be considering this option. She is very tired from the ongoing dyspnea and the recurring pain. And tells you that hospice sounds like a good option if it can help make her more comfortable. She understands that in order to get her pain and dyspnea under control, the medication may make her sleep a lot more. At the present time, with the goal of her care being prolonging her life as long as possible, adequate pain and dyspnea management has not been feasible, as the levels of opioids necessary to make her comfortable may hasten her death some. Understanding the predicament she is in, she is very inquisitive about hospice and the possibility of being made more comfortable is very appealing to her. She communicates all of this rather slowly as with her dyspnea, it is very hard for her to get enough breath to speak in full sentences.

After this discussion, Ms. Ingot’s husband and eldest son, however, have begun to stand vigilantly outside her door. Everyone who tries to enter, they approach with an aggressive demeanor, “You’re not going to talk to her about dying. We won’t have any more of this death talk. My wife/mother doesn’t want to talk to you about hospice anymore.” Their body language is threatening.

What do you do? Here are some ideas to get your thoughts flowing;

-meet with each family member separately to discuss their concerns and try to get them onto thee same page-meet with the family as a group and simply allow them time to talk without pushing any agendas – for hospice or otherwise-wait a few days to give them time to sit with the idea of hospice on their own-drop off educational literature about hospice and agree not to go into the room-agree not to discuss hospice and just visit and offer support-spend time in the room and hope that Ms. Ingot initiates the topic of hospice so that you are still respecting the family’s wishes-meet with Ms. Ingot when the family is not there so she may make the decision and then the family will just have to live with it-call security to escort you into the room so that Ms. Ingot’s family cannot act out their threats when you discuss hospice with Ms. Ingot again

Once again, I am not proposing any of these are the right answers. I’m just getting the dialogue started. What are your thoughts?

Wednesday, February 16, 2005

It has become increasingly common for people in our society to either reject their family of origin's religion or to more passively disengage from it. Despite this trend, spirituality becomes a major concern for people who are at the end of their life - if not consciously, subconciously. Religious heritage can complicate spiritual distress. As Dr. Martin Mary of the University of Chicago states,

"The more a seccular or pluralistic society has come to think of itself as distanced from its religious roots, the more it has become evident that these roots are long, deep, entangling, possibly nurturing and possibly strangling."

What does it mean to be spiritual?

In a recent lecture I heard on spiritual care for the dying, the speaker divided spiritual expressions into traditional religious and personal practice. I'm sure we are all more familiar with what showed up on the list of traditional religious spiritual expression, but I was fascinated (though not surprised when I thought about it for a second) by what showed up on the list of personal practices of spiritual expression.

Think about the activities that you engage in that aren't necessarily required for your survival (though those may be a spiritual experience for you as well). How do they make you feel? Do they feed your soul? Do these activities give you hope, meaning, strength, peace, a sense of love? How would you feel if they were taken away from you?

If you have a religious practice, do you belong to a congregation or faith group community? If so, do you look to that group for support when life gets you down?

About a year ago, I picked up the book "The Artist's Way" by Julia Cameron. I had realized that I'd stopped painting and how much I'd missed it. An artist friend had recommended this book to me, hoping it would bring me inspiration. Turned out, I picked up the paint brush (thanks to a new friend who literally put a paint brush in my hand) before I even finished the first chapter. But I noticed this book lying by my bed last night and flipped through it. Apparently, Julia Cameron couldn't agree more with this new definition of spirituality.

"Artists throughout the centuries have spoken of 'inspiration,' confiding that God spoke to them or angels did. In our age, such notions of art as a spiritual experience are seldom mentioned. And yet, the central experience of creativity is mystical. Opening our souls to what must be made, we meet our Maker."

Tuesday, February 15, 2005

A reader sent an email to me sharing some news that I found so inspiring that I wanted to share it with the rest of you. Apparently, there is an Oncology doctor in California who has been working in hospice for years who quit working as a doctor for six months so that he could spend that time getting certified as a nursing assistant. He said that the daily activities of having your bottom wiped, getting mouth care, and being turned are so significant in the end of life that he found it very educational to get this training. When people are no longer able to speak, having your bottom wiped gently and with compassion instead of having your bottom rubbed aggressively can provide profound dignity to the patient and send a message that we care. Apparently, he is the only Oncologist in California who is also a certified nursing assistant. Thank you to Dr. Kehr and to all of the nursing assistants who provide such loving care to dying patients!

Friday, February 11, 2005

At a recent conference on death and dying, there was a panel of survivors who spoke about their experiences of their loved ones' deaths. One speaker brought up the ever-controversial subject of whether or not to tell people that they are dying.

A few interesting perspectives to this scenario have made the answer blurrier for me.

For one, in some cultures (in this case the speaker was Chinese), it is not considered appropriate to tell someone that they are dying. Saying such a thing would be like cursing them and would be viewed as incredibly disrespectful. Although in the U.S. we are often shocked - how could we not tell them? This is their right as an individual! It's not fair for a family member to decide not to tell them! This is a very culture-specific sentiment. In this country, we are all about the individual. In other cultures, however, the family and/or community is viewed as more important than the individual. And we need to be mindful of these cultural differences, even when it comes to questions of ethics. Perhaps even more so when it comes to questions of ethics. One could say that even the notion of ethics is culturally-constructed.

This speaker had lost her 8 year-old daughter to cancer. At the time of her daugther's initial diagnosis, she had told the nurses not to tell her daughter that she was dying because she wanted her daughter to be happy and to enjoy what was left of her short life. The nurses obliged her requests, though they were certain that the daughter must already know. The daughter had spent years in the hospital and had witnesssed many of her hospital friends die from the exact same fate of this disease. But the mother insisted that she knew her daughter best and was certain that her daughter was unaware of the seriousness of her condition. The child was never told. At the very end, the child became short of breath and with one of her last gasps, she looked at her mother, "Mom, is this serious?" she asked. And shortly after, she died.

The mother, who spoke at this conference years later, is proud of her decision. Her grief was still evident from the tears that she cried as she relayed her story. (One never recovers from grief, but simply learns how to live with it). Her pride in her decision was consoling to her. She found a great sense of peace in knowing her child had been relatively happy and carefree until the end. Her grief, however, was complicated by the fact that she felt she had suffered from the pressures the doctors and nurses placed on her to tell her daughter that she was dying. So, in the end, what was more important? That may not be as simple as one would initially think.

Many of the people attending the conference still judged this woman's actions and disagreed. But I just listenned.

Perhaps there is a balance - education on the benefits of informing the loved one that they are dying along with a respect for cultural differences that may strongly indicate otherwise.

This is a somewhat new perspective for me. But as I've always said - I am still learning.

Thursday, February 10, 2005

In a post I wrote last September, called Unseen Sorrow, I casually mentioned that there our cultural differences in the way that people express their grief. Although my comments from that post were lost when I switched over to Haloscan, I recall a reader asked if I would expand on these differences.

This subject could certainly be the subject of a doctoral thesis, so I won't even claim to try to address the subject adequately. However, I will provide brief summaries of what might be expected among certain categories of patient populations. Please keep in mind, however, that people do not always fit into nice, neat boxes. This is only intended to help guide health practitioners and care providers in interpretting and anticipating emotional expressions of grief following a loved ones' death. And to help build an awareness that our culture affects our expression of emotions.

I have not made the following generalizations. All of the following information can be found in the book Culture & Nursing Care: a Pocket Guide edited by J. Lipson, S. Dibble, and P. Minarik. People from each of these respective cultures made these statements for publication in this guidebook.

For simplicity's sake, I will divide cultures by those that grieve more silently and those who grieve more emotively.

Silent Cultures

Cambodians - Death faced by family in quiet, passive manner.

Iranians - may pray or cry softly at bedside but will control noise level to provide patient with peace

Emotive Cultures

Arab-Americans - Family's grief is frequently open loud, and uncontrollable.

Colombians - may cry uncontrollably and loudly; women may be hysterical.

Cubans - public expression of emotion common.

Ethiopians & Eritreans - May cry loudly and uncontrollably at time of death. Women may tear their clothes and beat their chests until they become sick with grief. Men permitted to cry out loud and shed tears.

Filipinos - may cry loud and uncontrollably.

Haitians - may cry uncontrollably and hysterically.

Koreans - may cry, chant, pray and burn incense.

Mexican-Americans - wailing is a sign of respect.

Puerto-Ricans - Loud and unmanageable crying or thunderous talking to God is very common. Some might feel faint, nauseated, or experience physical illness.

Vietnamese - may start crying loudly and uncontrollably

American-Indians don't fall as neatly into either of these two categories. Sadness and mourning are done in private, away from the patient while the patient is still alive. However, once the patient dies, wailing, shrieking and other signs of grieving may also occur.

How does your culture influence your grieving? I would love to hear comments stating your family's cultural identity and how that affects your family's expression of grief.

To answer my own question - that's only fair, right? My family is a mix of European-American immigrants (Irish, German, Spanish, English, Scottish, Welsh, and gypsy most likely of Polish origins). My mother and her side of the family - the Irish/German/gypsy/Welsh - is very emotive; my father and his side of the family - the English/Spanish/Scottish/Irish - is much more reserved for the most part. As for me? Well, I guess I'm one mixed up kid when it comes to grieving. Ironically, as much as the silent grievers at work mystify me, I think I myself prefer to grieve in solitude.

Wednesday, February 09, 2005

I just came across an interesting site of death paintings. As a result, I kind of either got inspired or went mad (you decide) in a search for what other art representations of death are out there. Here is a sampling of both the good stuff and the diversity of what I found:

This is an outstanding website dedicated to death in art with excellent images as well as text by the webmaster: Pollefeys.

Mr. Whiting has done an incredible job of photo-documenting death rituals in American society. From tombstones to Roadside Memorials. Definitely a must-see website!

-contact friends/family to stay with the patient
-give her activities to do
-check in with her regularly
-give her a sleeping pill to help her sleep

You pretty much covered it all. As I mentioned in the initial post, looking for underlying causes as to her sensitivity to heat and cold (thyroid condition) may also help in this particular scenario.

In a similar situation, that's pretty much what I did. The patient didn't have any living relatives, but her DPOA (Durable Power of Attorney - friend designated to make medical decisions for her when she is no longer able) came by, I checked in on her regularly, did my charting in her room, attempted to get her to talk about her concerns, and gave her a sleeping pill the next morning. The next morning, after a few hours of sleep due to the sleeping pill, she finally talked to me a little about some of her concerns.

Good job! You all pretty much have it covered! I'd be happy to have any of you taking care of me if I were dying in a hospital. :-)

Friday, February 04, 2005

Since I got so much positive feedback about providing scenarios for discussion, I am posting another one. Again, this is a hypothetical scenario based on a mix of experiences. I want to hear your thoughts and then later will tell you what I would do / have done in similar circumstances.

Ms. Pearl has been pressing her call light every 10 minutes starting around 11:30pm. The first time you answer it, she tells you that she is too hot. She asks you to pull her blankets off, but they are already down. “No, pull them off my feet.” You see they are barely draped over the soles of her feet, but as she has asked, you pull them all the way off. You take her temperature, concerned she may have a fever, but her temperature is normal. Ten minutes later, you answer her light and she tells you she’s still hot and wants you to pull off all of her clothing. Though you discourage it and suggest using the fan instead, she says the fan hasn’t been helping and insists. You remove her clothes, leaving her half naked with just her diaper on. Ten minutes later, she is still hot. You unfasten her diaper, so that it hangs loosely against her body and turn on the fan. Ten minutes later, she is still hot, you run a cool rag over her entire body. Ten minutes later, she tells you she is freezing. You cover her in her blankets. Ten minutes later, she is just right, but her ears and her hands are too hot. You walk in and see the nurse’s aid has already added a pile of about a dozen blankets on top of her. You put cool rags on her ears and offer her ice packs for her hands. You decide that perhaps she is lonely and offer to sit at her bedside while you do your charting. She says, “That would be lovely.” But each time you put your pen to paper, one of her pillows needs adjusting. You try to start conversation by acknowledging, “Ms. Pearl, you seem kind of anxious with so many discomforts.” She denies feeling anxious.

What do you do?

Here are some options to get you started. I am not suggesting any of these is ideal, but just throwing some ideas out there:

-Give her Ativan for her anxious behavior even though she denies feeling anxious.
-Set limits – tell her to make a list of her needs and that you will address all of her issues once per hour
-Continue to sit in her room to do your charting so you can get up every few minutes to make changes as she requests them
-Give her a sleeping pill so she can fall asleep, knowing the elderly can get confused if they stay awake all night
-Continue trying to get her to talk about what may be bothering her psychologically that is manifesting in these physical complaints
-Look in her chart to see if she has a thyroid problem that may make her susceptible to temperature changes and suggest they restart her thyroid hormones for comfort though they probably discontinued them when they put her on the palliative care service

Wednesday, February 02, 2005

"I became a widow at 28 and although hospice was not a part of my husband's process people helping by telling me the stages of grief did happen a lot. It mainly resulted in the hair on the back of my neck standing on end and me emotionally shutting down to that person for a long time. To hear those things sometimes {by no means is this always true} sounds like a set of expectations and removes the individuality of the person having the experience. I agree that she needs to know that somebody can just BE there with her and that might be enough, or there just might not be enough time to get her through this."

Heather, the person who wrote that piece into my comments provided incredible insight and lots of food for thought.

I want to take a minute to talk about the grief of the dying. I want to start with a little exercise I heard once in a talk by Christine Longaker.

First, I want you to think of the one person you rely on most heavily in the world, the person you love the most, the person you spend most of your time with. Now imagine that they have died. For some of you, you may not need to use fantasy so much as memory.

Next, I want you to think of another person in your life who is significant to you. Now imagine that they have also died.

And this may be harder, but now try to imagine that everyone you know and love and spend time with has died.

Now, that all your loved ones have died, imagine that your dreams have died too. Your plans for that trip to Hawaii. Your dreams of learning how to surf. All your dreams and plans - no matter what they are - are all now dead. Have you ever had to let go of a dream? If so, you know the grief I am talking about, though even then you usually had new dreams and plans to make up for the ones lost. Now you have none. No future to dream of nor plan for.

If you can successfully imagine all of that, that is the closest you will get to understanding the grief of someone who is terminally ill.

Remember the grief you felt when a loved one died in real life - whether that loved one was a spouse, a sibling, a best friend, a parent, a grandmother, or a favorite pet. And imagine amplifying that loss to the loss of everything in your life.

The grief of the dying is great. It is more profound than any one of us can imagine until we are wearing those shoes.

I try to live life like it may end any minute. I make sure to kiss S goodbye and tell her I love her each time we part. You just never know. I try to cherish every moment - whether I'm washing dishes or writing in this blog. I may never know when my time is up. But even living in the moment, I cannot even fathom that degree of grief nor do I honestly want to.

Tuesday, February 01, 2005

I am shocked when I come onto shift and grab my patient’s chart to discover that the nurse before me didn’t chart a physical assessment on a dying patient. Do some nurses think there is nothing to assess, no need as the patient is dying? I just don’t understand what the rationale is for these nurses? Do they think the patients whom they are trying to cure of disease are more worthy of their time and attention? If that is the case, you need to get a job somewhere else. I hope that my blog has already illustrated why nursing care of dying patients is so crucial. But to illustrate the physical exam specifically, here is a very abbreviated version of my assessments:

Vitals
Although many doctors will discontinue vital checks on dying patients, some of the vitals are still helpful and/or necessary. We wouldn’t want to walk into a dying patient’s room with a beeping pulse oximetry machine to check their oxygenation because what are we going to do different if their oxygen saturation is low? Their oxygen saturation is irrelevant – though managing their dyspnea (physical sensation of having difficulty breathing) is crucial. You should count respirations. For one, a declining respiratory rate may indicate they are getting closer to their end of life. For a patient who is no longer able to speak, a high respiratory rate may be our only indication that the patient is either in pain or is having difficulty breathing. You can also place your stethoscope against their chest without causing any discomfort and obtain a pulse. Their pulse can give you a clue as to how close to end of life they are (if it is either very high or very low), but also if they are febrile (have a fever). I also use obtaining the pulse as an excuse to make initial physical contact with the patient. I am very gentle with my stethoscope and always use my free hand to stabilize myself as well as provide another source of gentle, caring contact with the patient (usually on their shoulder). By having your hand on their body, you can also assess if their body is warm. If their body is warm and their pulse is high, check their temperature. Having a fever is uncomfortable. If they are febrile, we will want to treat that fever with Tylenol. You can use a suppository if the patient is unable to swallow pills.

Skin
All dying patients are at risk of developing bedsores. You don’t need to turn the patient over specifically to check their skin. Wait until you are doing a diaper change or until they need to be repositioned (which should be done every two to three hours on all dying patients). Then check all areas with bony prominences for signs of skin breakdown. As a reminder – a pink area that does not blanch when you press on it is a stage one bedsore (aka pressure ulcer or decubitus). This is the first sign of skin breakdown. Be sure to check their heels as well as their back.

Lungs
Again, don’t turn the patient to specifically do this exam. Wait until you are turning them for other reasons. Minimally, chart the presence or absence of a death rattle. Chart whether their breathing pattern is irregular (which frequently happens as they get closer to death), if there are periods of apnea (when the patient stops breathing briefly), chart whether or not their breathing appears labored. Do you see them using abdominal muscles in order to get air in?

Cardiac
Again, you’ve already counted the pulse with your stethoscope. Also feel for peripheral pulses. Pulses frequently become diminished as people approach death. The carotid pulse in the neck may be the last pulse to be seen and/or felt. Sometimes getting a pulse is extremely difficult as a patient nears death. Check for warmth of skin. Not only will warmth tell you if they may have a fever, but coolness in the limbs may let you know that they are nearing death. Look for swelling in their limbs and abdomen.

Neuro
Even if they can’t speak, chart whether or not they open their eyes, whether or not they respond at all to stimulation. Do they moan or grimace when you turn them? Not only does that inform you of possible pain, but it also provides information as to neurological status. Are they sleeping all of the time or do they come in and out of sleep.

GI & GU – The In’s & Out’s
I am always surprised when doctors discontinue I’s & O’s. For non-medical folk, this is tracking how much fluid goes into the patient (by mouth or IV) and how much fluid - urine, diarrhea, emesis (vomit), etc - comes out. A decrease in urine output is a good indication of how close to death they are. Even if the doctor doesn’t ask for I’s and O’s, I will track them, especially if the patient has a urinary catheter in place. It’s very easy, so why not? If they are incontinent and don’t have a catheter in, I will still chart whether or not they have wet their diaper. I always chart the last date that they took in any food and whether or not they have stooled during my shift as an assessment for constipation. If the patient is still alert, are they eating? What are they eating?

Musculo-skeletal
At the very end of life, most patients are bed bound. However, chart whether they are moving their body at all independently. If they are not moving, are their extremities flaccid or contracted? Are they cachectic (extremely thin and wasted)?

Psychosocial
If the patient is awake and alert, chart their mood. If the family is present, chart whether or not they are coping well. Document any education you do with either the patient or the family. Care planning is very useful with dying patients and their families so that the next nurse who comes in knows where the family is at: what education needs to be reinforced, what resources might they need referrals to, etc. Has the patient become agitated during your shift?

Pain & Other Symptoms
Last, but certainly not least. Symptom management is the most crucial component of palliative care. Make sure you document symptoms well. If the patient is alert, are they reporting symptoms of pain, nausea, anxiety, dyspnea, itching, etc? If they are not alert, are they showing signs of any of these symptoms – moaning, grimacing, scratching at self, becoming agitated (which may be a sign of discomfort), pulling at tubes (may also be a sign of discomfort), etc?

I could write an entire book on assessing dying patients, but I guess I just wanted to make a point. Don’t leave assessment pages blank. There is always ample information to chart, even after you’ve just walked in and out of the room once, you should already have gathered some of this information at first glance. For information on symptomatology, see the numerous posts I have done on symptoms thus far.